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Starting Chemo December 2019

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Comments

  • Ivana
    Ivana Member Posts: 16
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    Kat333, please let us know your diagnosis and chemo? You can set it up in your profiles on here, then it attaches to every post you make. How often is your chemo? I’m due for my next on on Wed. next week. It seems most of the anti nausea meds worked for me this time, but the day after chemo was worse than the actual day.

    Good luck with your treatment! We are here for you...only this crowd understands what we are going through 🤕☺️

  • jrnj
    jrnj Member Posts: 407
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    Kat333 Yes feeling better thanks. Day 3 is always the worst, then it gets better each day. Which is why I am wondering if it is the Neulasta SEs? Not the typical bone pain, but the other overdose side effects, headache, dizzy, weak, sore throat. By day 6 I have the opposite, nervous energy, can't sit still. I Shopped all day today, had to get out of the house.

  • Sunrisefish
    Sunrisefish Member Posts: 35
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    Ivana, you mention you are working... me too. Any others trying to keep working? I didn't plan any time off after this first treatment, but plan to take one week off for each of the others. Going to play it by ear and see how I feel. I work for a global company so I have the liberty of working from home if I have to, but would much rather be in the office. I told everyone about my treatment at work ...and everyone has been extremely supportive. They keep bringing me little gifts of scarves and such. I do have 2 wigs... but they really don't feel like me... not sure I'll wear them... the scarves seem more comfortable and I'm all about comfort!

    My main worry right now is dry eye... I've had that for 15 years anyway... one of my eyes waters all the time... already after first treatment my eyes are more irritated. Ugh!

    Sending healing thoughts and prayers to all.

  • maryjv
    maryjv Member Posts: 269
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    Sunrise-I am planning to work through chemo, I started on 12/30-but I took these two weeks off with my 7yo since she is off from school. I am a dietitian and I work with dialysis patients so def afraid of exposure but I’m going to try my hardest to. Minimize my time in the clinic with the patients. I feel like my boss is supportive but we shall see how much I can get away with since my job is primarily education. Just feel maybe I can use the iPad or phone to communicate!
  • Eigna
    Eigna Member Posts: 256
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    I finally did it. I shaved it off today and I feel good. I feel liberated. There was hair all over the place. No more mess. I thought I was going to cry but I didn't it. We are stronger than we think we are. 💪

    Now I'm facing another problem. My hubby is just starting a cold and I will be doing chemo this week... now what do I do?????

  • Ivana
    Ivana Member Posts: 16
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    Sunrise and Maryjane, I wish you both luck in getting back to work. Tomorrow is my first day back. Not sure if I’ll have the energy to make it all day. I have a supportive team, but I’m worried about straining everyone since my treatment will last a year the way things look. After chemo and surgery, my schedule might be more normal, but in the meantime, I’m worried about chemo side effects becoming more debilitating as the treatments continue each week.

    I’m very proud of finally exercising today, was going for a 30min. walk, but ended up doing 45min. Now I’m exhausted though.

    Have a good day everyone!

  • Ivana
    Ivana Member Posts: 16
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    Hi Eigna, glad you did it, it’s less traumatizing than seeing hair everywhere than where it belongs!

    Just try to stay away as much as possible from you husband. Wash your hands frequently and take a strong vitamin C. I’ve been taking 1,000mg for about 6wks now and even though my sons and other people have been sick around me, the vitamin seems to protect me from getting it full blown. The most I’ve had was a two day mild cold, even though I’m prone to get long ones and severe sinus infections in the past. Please be cautious because your immune system is definitely weak during chemo.

    Sending good wishes your way...

  • jrnj
    jrnj Member Posts: 407
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    My nurse said no Vitamin C or supplements, it might interfere with chemo. I searched it and it was a Sloan trial. It is mostly Vitamin C and also any antioxidant supplements. Vit D and calcium are ok. And apparently no B12 also. Apparently not everyone agrees, but I just wanted to mention it in case you haven't heard. My daughter has been sick for weeks, but luckily I did not get anything. I think the Neulasta really helps. My WBCs were 19ish, way over the normal, don't know if that is a bad thing, nurse didn't tell me. I think years of getting sick with my kids also boosted my immune system.

    Work is tough in the middle of this. I have a very demanding job, but I've been off since September surgery. I was going to go back one week on one week off, but decided not to. It would be too stressful. I am lucky that I can probably stay out for a while without getting fired, but my bosses are still freaking. My eyes are watering a lot too. I wear glasses, sometimes contacts, but can see better with glasses.

    I cried when so much hair came out in the brush, and I hadn't cried in a while, since in a lot of pain from surgery. It is very traumatizing. I just don't like my face, lol. I'm glad you are strong and taking it well.

  • Eigna
    Eigna Member Posts: 256
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    I agree with JRNJ regarding vitamin C and supplements. My MO told me to stay away from all vitamins and supplements until I finish chemo.

    I am lucky that I can stay home until I finish treatments and all.

    My scalp is very sensitive though. What kind of shampoo and hair products do you put on sensitive scalp?

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Hi Everyone! Just checking in. I'm new to the forums. I started my first chemo (TC) on 12/23. Some things are going well and other things aren't. I've always had a lot of problems with my stomach (IBS, several cases of colitis, SIBO, etc), so it's been no surprise that I've had a lot of bad stomach pain with the chemo. I saw my Gastroenterologist this week and he suspects it's gastritis acting up so he prescribed Protonix (similar to Prilosec). I've gotten a little relief from it, but still dealing with some aches and discomfort. He also ordered an ultrasound of my stomach to rule out a few other things.

    The other thing that happened is when they did my blood work on day 7, my Neutrophils went very low .22 (and I even had Neulasta on day 2). They said I'm neutropenic. Which of course scared me and I'm paranoid to go anywhere or be around anyone. So it's pretty much just been me and my hubby at home. I know this is definitely not helping me emotionally. I have walked outside every day though and that has helped. Except for feeling tired and kind of like I'm on the verge of getting a cold or something, I feel ok. Yes, there's been some other annoying side effects, but otherwise I feel normal. And I would so like to go live as normally as I can right now (but of course I'm scared).

    I see my Dr on Tues and hope to get a better understanding of all this.

    I've been reading the posts and you all seem like such a positive, encouraging group. I thought I'd find support here:)

  • margo53
    margo53 Member Posts: 131
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    hi everyone!

    Hope all had a Happy New Year, all this considered.

    My head is not sensitive but somehow it’s comforting to apply coconut oil and alternate with pure aloe Vera.

    Speaking of Vitamin C......I have read to avoid Vit C during chemo.... however, has anyone read the book called

    “How to starve your cancer?” by Jane McLelland? She discusses Vitamin C IV, not during chemo but as an alternative treatment she addresses many types of cancers, mostly advanced stages....

    would love to hear thoughts if anyone has read this book.

  • margo53
    margo53 Member Posts: 131
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    hi havefaithtoday... glad you are part of us, of course it goes within saying no one is happy about this diagnosis.

    I also had my TC on Dec23 ( second dose). ......yes, we all have different SE.... how did you learn you were neutropenic? Was it a routine blood test? I ask because, I also getNeulasta and haven’t been requested to come in for a blood test... just curious.

    Are you already on Tamoxifen? I am not yet. I’m just wondering if I should be. I know I will be on something along that line.

    I have my next treatment on a Jan 13. I Hope you will be proceeding to have yours that day also

  • maryjv
    maryjv Member Posts: 269
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    Hello all! Just checking in...day 7 past my first AC tx and had a major plumbing issue at home!!! Well def no time for feeling bad today! I Did want to ask if anyone feels bad when they eat? Every time I eat it feels like I have nothing left to give (just overall exhausted/fatigue) which passes after awhile...just wondering if I should call the doc or is this Normal?
  • margo53
    margo53 Member Posts: 131
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    hi maryjv..... sometimes I eat and it’s so bland I wish I didn’t have to eat at all.... also drink, tastes terrible....every day is different as far as taste buds!. Fatigue and exhaustion is very normal so I think you’re fine but by all means if calling your MO will make you feel better, please do

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Hi Margo53,

    I found out I was neutropenic when they did my blood work after 1 week of chemo. I guess they just do that for the first chemo session. Subsequent sessions I'll just be having the blood work done the day before my chemo. A friend told me her Dr does them on day 12-14 to see where they're at. So I guess each Dr has a different protocol. But I'd sure like to know where I'm at so I know if I'm still in the neutropenic state or not.

    My next chemo is Jan 14. So it sounds like I am one cycle behind you. Are you doing 4? Did you notice any differences between having the first cycle and your second?

  • margo53
    margo53 Member Posts: 131
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    havefaithtoday......wow! My MO only does labs the day of treatment....first thing, right before. I guess that might could change depending on what the lab results were. I’m assuming they put a lot of faith in Neulasta....

    I am doing 4 treatments in all....yay, number 3 is a week away! Can’t wait til I’m done.
    I did notice a little difference in the first two cycles....the second one I had a good amount of diarrhea.... dunno if that could have been something I ate... my mouth hasn’t been as sore with the second cycle, I used a lot more baking soda/salt rinses the first cycle. However, taste buds equally messed up.

  • maryjv
    maryjv Member Posts: 269
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    Margo-same boat as you, testing right before treatment...also taste buds are definitely done and it makes me nauseated to do the mouth rinse so have focused on brushing my teeth often and water pick for cleaning!
  • katej128
    katej128 Member Posts: 12
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    I am one week out since my first TC treatment. I started the 480 dose of Zarxio injections on Day 3 and it has been horrible unrelenting bone pain. Taking Claritin once a day and maxing out in Tylenol and Ibuprofen. It barely helps at all. My doctor approved me stopping the injections after 5 instead of 8 days. I’m so happy to not have to have one this evening!

    Other than the bone pain, I developed thrush today even though I was constantly brushing, rinsing with baking soda, salt water mix, and drinking lots of fluids. Started the nystatin liquid this afternoon, so hope it clears up in a day or two.

    This whole thing really sucks. I’m so grateful to you all for sharing your experiences so I know what to expect. I’m assuming the hair loss will be the next issue that I readying myself for. Picking up my wig on Wednesday but holding out hope I’ll be an exception and not lose my hair. It’s possible right?


  • Eigna
    Eigna Member Posts: 256
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    All clear for me. Blood test results wgood. Tomorrow is Round 2 TC. Here I come! Ready for it ! 💪 🥊 We can do this ! Just remember all these side effects are temporary. Soon it will be all over.

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Katiej128, we are just one week apart. I'm sorry the bone pain has been so bad. They gave me Neulasta. I did have bone pain with that, but it only lasted several days. I took Claritin, but not sure it worked. I can't really take pain relievers because of my very sensitive stomach. I sure miss being able to take Turmeric...that helped a lot with inflammation, although not sure it would've helped with bone pain. Oddly enough, walking did help ease the bone pain a little. On an encouraging note for you, in general I really started feeling better at about day 14 (today is only day 15). And I did a blood test today and my ANC went back up. So the Neulasta must've worked, but it took a little bit of time. Praise God. Hope you start to turn the corner soon.

    Eigna, you are 1week ahead of me. How did you feel from about day 14-21? Good luck with cycle 2 tomorrow. You are right, we have to remember the side effects are temporary. Hard to do in the moment, but we've all GOT THIS!!!!!!

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Maryjv, I saw my DDS before I started since I was finishing up some dental work. I asked him about mouth rinses and he told me to do a rinse with 1 part hydrogen peroxide with 4 parts water. I've been doing that and it's helped. It doesn't really have any taste.

  • maryjv
    maryjv Member Posts: 269
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    Have faith-thank u sooo much will try ASAP!!! I also had the neulasta with very little bone pain-theNP from the chemo education asked me to take Claritin and Pepcid daily starting the day before chemo for a total of 5 days...I hope it’s what helped but now I have a really sour stomach so trying the Pepcid for the stomach issue!! It’s Only temporary!

  • Eigna
    Eigna Member Posts: 256
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    Havingfaithtoday-Day 14 to 21 it was ok. Other than I was recovering from a cold I was able to function. Even went for a few walks outside. So you will feel better. Don't worry everything is temporary.

  • Eigna
    Eigna Member Posts: 256
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    Maryjv - how many AC rounds you have to do? I don’t remember.

  • maryjv
    maryjv Member Posts: 269
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    I have completed my first round of AC on 12/30...

  • Eigna
    Eigna Member Posts: 256
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    Maryjv - yes but how many rounds left? Are you doing 4 cycles in total or 6

  • maryjv
    maryjv Member Posts: 269
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    I will have 4 total cycles of AC followed by 12 cycles of weekly taxol...today I went back to work really nice to be back and walked during lunch and now! Feeling good today! The team had shirts made for me and everyone wore them!

    image

  • havefaithtoday
    havefaithtoday Member Posts: 88
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    Maryjv, that is so awesome! What a wonderful support system your work is providing.

    Eigna, how are you feeling after round 2?

    How's everyone else feeling?

    My Neutrophil #'s finally went back to normal range and when I saw my Dr today she said my body just had a delayed response to the Neulasta. She said most likely that will happen again and I'll probably be neutropenic again. I will just have to be extremely careful on days 5-14. So I'm trying to plan accordingly.

  • kat333
    kat333 Member Posts: 38
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    Thinking of you all... Treatment weeks are a bit overwhelming, for me, having to work multiple appointments into my schedule.

    Maryjv what an amazing welcome on your first day back! That made my heart smile.

    Ivana am hoping your first days back to work are not taxing you too much. Keep us posted on how you're doing.

    Sunrisefish I, too, am working through treatments but cut 5 to 10 hours weekly. Sounds like you have a lot of support and some options with being able to work at home. Keeping busy can keep our minds from wandering to places better avoided.

    JRNJ I agree that a demanding job would be too stressful and happy you're able to stay out for a while. If not for the understanding and support, I have received, would have taken a leave.

    Katej128 I am so sorry you're having a rough go and hope nystatin clears the thrush quickly and the bone pain eases. And yes... This sux bona fide!

    havefaithtoday thank you for the hydrogen peroxide mouth rinse info. It's good you know, now, to plan for a delayed response to the Neulasta. Glad to hear your numbers are back up!

    margo53 "every day is different as far as taste buds!" Yes! A week or so after 1st chemo it seemed to be getting better only to go back to everything tastes bland or just weird.

    Eigna... Yay you're getting out and walking. Doing the same even if having to drag myself, kicking and screaming, out the door. Am on my days long, steroid induced, No Sleep run. uggh

  • Eigna
    Eigna Member Posts: 256
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    Maryjv- that is awesome. Cool shirts!

    As for me I'm doing great. Day 2 today of Round 2. I feel ok. Slept well yesterday night compared to the other two nights. I think I was nervous. This morning I felt a bit nauseous but after I took my Dexamethasone I felt better. Keep drinking water and liquids. Taking it easy today.

    Yes! havingfaithtoday, we need to be careful Day 5-14 since our neutrophils will go down. I'm paranoid with that issue. I hope I don't end up at the hospital again like last time.